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Friday, July 8, 2016

Sorry for the long hiatus. To say it's been a crazy month would be an understatement.

I've been on a few treatment wild goose chases, and some strong leads. I have about an 85-90% lock on my new protocol, pending any changes. (And there's always changes.) I can't get my fingers on everything immediately, but I'm headed back to NYC next week for a previously unscheduled treatment and meeting to address a few ideas.

It's been a highly stressful time, but I'm still having a lot of fun. It IS summertime, after all.

I've wanted to do an update, but things were up in the air. And, I don't really have the time to emote, or the energy to write just to write. It's been taxing, and when I wasn't scrambling, contacting doctors, radiologists, researchers, patients, I needed to decompress so that I could wake up and do it all over again.

I have no clue if this new protocol will be enough to stop the tumor growth - oh wait, I think I haven't even told you that the tumor is, by all consensus from every single one of my doctors, clearly growing again. Crap in the pants is about how I feel about it.

I keep wanting this tumor life to be over, to not live in limbo, but oh well. It is what it is. I hadn't said anything on the blog - at least I don't think I did - but Dan and I had started the process (very premature stages) of getting approved to adopt foster children. Because I had been stable for over a year, it was a legitimate possibility. But I keep learning that my life is not really my own, and I don't have the luxury of planning. I realize typing this out that I may sound sad, but I'm not. It's just a fact.

Each recurrence I am reminded that I need to just be grateful to be alive, to be here in this moment. That fact has to be enough for this life. Good thing I've been doing a damn good job of it. I'm still just as social, still walking with my group as much as I can, jogging, gardening, doing weekend trips with friends. It's not that bad to live in the moment, to tell you the truth. Maybe it's like those crazy fools that are adrenaline junkies. I'm not to that level, but I can appreciate their hunger.

Our lucky Independence Day jelly in FH. Those whispy little stingers. Just like life, beauty always comes with a price.

Also, I want you guys to know that when I run into people at the grocery store, or the coffee shop, and people introduce themselves, or say hello after years of not seeing each other, and they tell me they follow the blog, and that they care about me, about us, it's about the most gracious and heartwarming thing. In those moments I just want to reach out and hug people. And sometimes I do, and other times I don't want to freak them out. So thank you, for caring, and for telling me. It makes me feel incredible!

12 comments:

Jessie, we grew up together but I was a few years younger. I see you from time to time on the island and I never say hello because I doubt you know who I am. I look up to you more than ever, I want you to know. I've never commented before, and maybe now, when I see you again I'll finally say hi.

Hi FH buddy. Thank you for commenting! I really hope you do say hello next time you see me. I feel really bad, but back between 2010 through a lot of 2011 (and probably beyond) I didn't have good facial recognition for ageing faces. Does that make sense? I'm afraid I would look at people that I should have known (I mean, I graduated with 50 people), but I couldn't place them. My brain was such a mess. Anyway, I still feel guilty about it. I couldn't place people unless they looked exactly as they did over a decade ago. I know I gave a lot of weird faces, and didn't say hello to people, or maybe even didn't smile, and I'm embarrassed about it. But I'm better about it now! In fact, there was a girl that I met at a coffee shop in FH that I didn't know but introduced herself as a blog reader and I'm still kicking myself for not reaching out for a hug. She was so sweet. My point is, please don't be shy. One of the most beautiful things in this life is connection. :) Love, Jess

Sweet Jessica,You are continually in our thoughts and prayers. You, Dan and your family have a whole community of "friends" out here who have never met you but we love and care deeply for you, Dan and your family. Thank you for updating us. My husband & I understand why you can't be updating all the time. I am the one who sent you a message a while back about how for a number of year he couldn't talk about his brain tumor /surgery so I ran interference on his behalf. You have to take care of yourself first dear one. Glad to hear you are enjoying the summer. great jellyfish picture too :-)

I appreciate the prayers, and of you thinking of us. I really can feel the love, there's a palpable feeling I have that is calming me, and I think it's the love and support from people like you. I remember your story, and I think about you two all the time. Your perspective is always helpful to me. You always understand the nuances, and I appreciate it very much! I'm sending you guys big hugs, thank you for taking the time to give me support, it means a lot.

Hey Coconuts! Crap in the pants is an entirely spot-on metaphor, observation, what-ever-you-want-to-call-it... And your perseverance to find the appropriate treatment is extraordinary, especially on the days it feels like you are trying to catch the photographed jelly fish with just using your elbows. I appreciate the updates when you can; you take care of you first - I can wait :) Good luck in NY and hang in there - the Seahawks start playing next month! Love you!

Criquette! I love love love you. I'm glad you weren't offended by my crap in the pants. :) I never want to offend anyone so there's a fine line with my language and metaphors. Because, for the record, I didn't crap my pants. I appreciate you keeping up with me, I can feel your camp mama love. It's a warm blanket of love and smiles, and giggles. You are an amazing soul!!! And GO HAWKS! The countdown is most definitely ON!

Happy Summer Greetings from Cleveland (aka Believeland). Thank you for the updates and the reminder to live life in the moment, no matter what our situations are. I'll be sending Positive your way. --Holly

I've never heard of Believeland! Talk about selling it! Now I want to come visit! Believeland is quite possibly the most clever moniker I've ever heard. Thank you for the Positive, it's working. Your energy helps me dance through this always surprising puzzle!

Dearest Jess ~ I think about you all the time and keep you in my thoughts and prayers!!! Lots of pesky medical issues on this end since my stroke but I'm doing well! Since day one I have been your faithful cheerleader! And I am confidant that you will overcome this!!! Then one day we will meet in Friday Harbor and just have FUN!!! Love You, "So Cal" Patti

SO CAL! How is our Patti?! How is the recovery? You have absolutely been my faithful cheerleader, without doubt. You are appreciated, and I am looking forward our time in the salty Friday Harbor air. You are dearly loved!

Thought of The Day

The Fundraiser

I am so grateful for the GoFundMe account that our friends set up. They started it last fall, because I stopped my treatments because of lack of funds, and now, possibly because of my lapse, I have a brain surgery scheduled for March 3rd, Dan's birthday. We are hopeful that our neurosurgeon will be able to remove the majority of the three brain tumors. But having it be out of state, it's complicated financially, and we are very thankful for your donations, and your prayers!

Disclaimer

This blog is intended to be informational, and hopefully at times, educational. It represents solely my personal opinion. This blog and my opinion are not meant to be construed as professional medical advice for any specific person or patient or condition. Qualified and licensed healthcare professionals should be consulted before considering or using any therapeutic product or drugs discussed in this blog. Definitely work with doctors and specialists to find your own cocktail approach. Please don't take my word for anything, do your own research.

Thank You Note

I read every single comment I receive on the blog and I'm incredibly grateful to receive them! I don't always have the opportunity to respond to all of my comments and emails, but I appreciate the support very much. Thank you for checking out my blog. It's incredibly therapeutic for me, and I hope you find my story helpful.